Attrition in a telehealth caregiver‐mediated behavioral intervention for children with tuberous sclerosis complex: A mixed‐methods study

This study examined why some families withdrew from a telehealth caregiver-mediated behavioral intervention for young children with tuberous sclerosis complex (TSC), a rare genetic condition that often involves epilepsy, autism, and developmental challenges. The intervention aimed to support children's social communication and play skills through weekly coaching sessions with caregivers. Researchers used both quantitative and qualitative methods to better understand barriers to participation. Fifty-nine families participated in the clinical trial. Exploratory quantitative findings suggested that families of children with greater seizure severity and families enrolled during the COVID-19 era completed fewer intervention sessions. Distance from the study site and socioeconomic or racial/ethnic status were not associated with attrition in this sample, although the study was not large enough to detect smaller effects with confidence. Qualitative findings provided important context for these patterns. Parents described multiple overlapping challenges that affected participation, including hospitalizations, seizure worsening, competing therapies, work and caregiving demands, scheduling difficulties, and feeling that the intervention was not the right fit for their family at that time. Many families described ‘cumulative burden’, where several stressors occurred simultaneously and made continued participation difficult.